The Benola power point. - Benola

advertisement
CEREBRAL PALSY 101
THE DEVELOPING BRAIN
 Critical Periods of Brain growth
 1 month – neural tube
 4th month – All the lobes and major divisions
complete
 1 year post-natal – 2/3 adult size
 2 years age – 75% adult size
 5 years – 90% adult size
 Potential for Neurogenesis [new brain cell formation]
(peaks in utero) and Synaptogenesis [new connection
formation] (peaks by 5 years) continues throughout life.
DEVELOPMENTAL MILESTONES FOR A
NORMAL CHILD
 Primitive reflexes (disappear by 3-4 months)
 Neck control 3-4 months (earlier in African children)
 Sitting 5-6 months
 Rolls 7 months
 Crawls 7-8 months
 Stands with support 10 months
 Walks 12 months
 Climbs up and down stairs 20 months
CEREBRAL PALSY (CP)
 A group of disorders of the development of
movement
limitation
and
that
posture,
are
causing
attributed
activity
to
non-
progressive disturbances that occurred in the
developing or infant brain.
CEREBRAL PALSY (CP)
• This is often accompanied by disturbances of
sensation, cognition, communication, perception,
behaviour or by a seizure disorder.
• It is reported to be the most common cause of
motor deficiency in childhood both in developing
and developed countries.
CAUSES
General
 Premature babies — particularly those who weigh less
than 3.3 pounds (1,510 grams or 1.5kg) — have a higher
risk of CP than full-term babies.
 Falls and birth traumas occuring before, around or
shortly after delivery
Nigeria and Developing Countries
 Problems during labour and delivery that lead to
difficulty in establishing breathing at birth
CAUSES
• Excessively high bilirubin/jaundice
• Infections (Intrauterine and Perinatal)
• Metabolic such as Hypoglycemia or Low blood
sugar
Developed Countries
• Extreme prematurity
• Inborn Errors of Metabolism
TYPES OF CP

Spastic Cerebral Palsy: This causes stiffness and
movement difficulties

Dyskinetic Cerebral Palsy: This
can
be
either
Athetoid Cerebral Palsy — leads to involuntary and
uncontrolled movements or Ataxic Cerebral Palsy —
causes
a
perception
disturbed
sense
of
balance
and
depth
TYPES OF CP
• Mixed Cerebral Palsy: This is a mixture of
different types of cerebral palsy. A common
combination is spastic and athetoid
FURTHER CLASSIFICATIONS OF CP
 Clinical (spastic [too stiff], flaccid [too soft], extra-
pyramidal
[moving without control or abnormally
positioned] and mixed).
 Anatomical (number body parts [limbs] affected)
 The Gross Motor Function Classification System
(GMFCS), a recently developed system, classifies
children with CP by their age specific motor activity.
FURTHER CLASSIFICATIONS OF CP
• Based on the assessment of severity of CP in
children 0-12 years of age based on their
functional
abilities
rather
than
their
limitations.
• It describes the functional characteristics in
five levels, from I to V, with level I being the
mildest.
ANATOMICAL DEPICTION OF CP
THE GROSS MOTOR FUNCTION CLASSIFICATION
SYSTEM (GMFCS)
Before 2 years
2-4 years
4-6 years
6-12 years
Level I
Manipulate objects
with hands and walk
independently
Gets up from sitting
without holding unto
something
Can climb stairs
Walk indoors and outdoors, climb stairs.
Level II
Belly crawls, pull to
stand on furniture and
cruise
Can assume sitting
position without
assistance, walk with
assistive device
Sitting with both
hands free, walk
short distances
without assistive
device
Walk indoors or outdoors on level surface only
Level III
Can roll and creep
forward on stomach
‘w’ sit and require
adult assistance to
assume sitting
Walk with assistive
device
Walk indoors or outdoors on level surface with
an assistive mobility device.
Level IV
Can roll independently
Able to roll and
creep, can sit when
placed, but need
both hands on the
floor.
Sit independently
in a chair but
minimal hand
function
Rely on wheeled mobility, may achieve selfmobility using assistive device
Level V
Limited voluntary
movements, no head
control
Requires adult
assistance to roll
All areas of motor
functions are
limited.
Functional limitations in sitting and standing
are not fully compensated for through the use
of assistive device.
DIAGNOSIS OF CP
Delayed motor milestones
 Fisting after 5 months of age
 Inability to sit with support by 8 months
 Inability to walk at age 15-18 months
 Discrepancies
between
intellectual
and
motor
development
 Persistent or evolving increase or decrease in muscle tone
DIAGNOSIS OF CP
• Head lag beyond 6 months of age
• Poor trunk control and balance
• Opisthotonic posturing and extensor thrusting
• Development of Dystonia
• Toe walking/scissoring of feet
• Abnormal motor or gait patterns
MANAGEMENT OF
CEREBRAL PALSY
A MULTI DISCIPLINARY
APPROACH
ISSUES IN MANAGEMENT
 The Stigma
 The Fears
 The Reality
STIGMA
 In African culture, children are highly cherished
for many reasons, principal amongst which is the
hope that they will bring prosperity in future.
Thus when a child is diagnosed as having a
condition
that
diminishes
such
expectation,
hopes are dashed and parents often go through a
process that can be associated with grieving.
STIGMA
Next comes blame:
• Is it a curse
• Evidence of infidelity or witchcraft
• Is it hereditary
CONSEQUENCES OF STIGMA
 Denial of the child
 Neglect - A significant number of children are
severely malnourished
 Social isolation: Many children are hidden away
from
other
community.
family
members,
friends
and
the
Some are shipped of to live with
distant relatives who are not in a position to provide
proper care
 Infanticide: There are numerous recorded cases.
THE FEARS
 Will it happen again?
 Who will bare the high cost of care?
 What is the duration of care?
 What quality of life is the child expect to have?
 What label will be placed on the child? i.e.
Impaired, Disabled, Handicapped.
THE REALITY
 No quick fixes or magic cures.
 Care is multi-disciplinary.
 Process of care is long, requiring determination,
patience and faith in the in-born (often times
undiscovered) abilities of the child.
 Most therapies often require prolonged periods
before appreciable differences can be seen.
 It is difficult to predict response to therapies.
THE REALITY
 Most families go through different stages of grieving before
finally accepting the diagnosis
 In Nigeria, without social security, the complete cost of
care for a child with CP is borne by the parents
 In Nigeria and other African countries, most causes of CP
can either be prevented or considerably reduced with
improved Basic Health Care Services
 As stakeholders, we should all be change agents and join
in the advocacy for the rights of children living with
cerebral palsy and other childhood disabilities
TREATMENT/MANAGEMENT OF CP
 Cerebral palsy can’t be cured, but early application of the
right management options for the child often results in a
marked improvement in the quality of life of an adult
with CP.
 The earlier treatment begins the better chances children
with CP will have in overcoming developmental
disabilities or learning new ways to accomplish the tasks
that challenge them.
TREATMENT/MANAGEMENT OF CP
• CP usually affects several areas of functioning and as
a result, there is a requirement for several disciplines
to be involved in managing the condition
• It is also preferable to have a pediatrician coordinate
the activities of the multi-disciplinary care team in
order to ensure an effective treatment outcome.
GENERAL PRINCIPLES OF
TREATMENT/MANAGEMENT
 Determine severity of the disorder in order to arrive at
an appropriate level of intervention that is required for
proper management
 Establish clear indications and goals for each therapy
 Ensure that therapists and operators of intervention
programs are well informed about the child’s condition
and that they also inform the physician of their
activities
GENERAL PRINCIPLES OF
TREATMENT/MANAGEMENT
• Details of local intervention programs with details of
eligibility, access and payment should be readily
available
• Include parents in therapy sessions and encouraged
them to incorporate what they learn into their child’s
daily activities.
THE MULTI-DISCIPLINARY TEAM
 Pediatricians - provide general care and coordinate the
activities of other members of the Multi-Disciplinary Care
Team
 Surgeons –provide specialist care and perform corrective
surgeries.
 Occupational therapists- help manage fine motor activities
 Physiotherapists- help manage gross motor movements
THE MULTI-DISCIPLINARY TEAM
• Speech
therapists
-
help
improve
speech
and
swallowing.
• Clinical Psychologists - provide emotional well-being as
well as cognitive evaluation for school placement.
• Special need educators - provide the right kind of
education for children with cognitive impairment
OTHER MANAGEMENT OPTIONS
The quality of life of children with CP clients can be
greatly enhanced through the use of the following:
 Prosthetic devices such as braces and other
orthotics
 Wheelchairs and rolling walkers
 IT
devices
such
as
computers,
voice
synthesizers and other accessories that can aid
communication and mobility.
WHAT PARENTS SHOULD DO
 Get diagnosis from appropriate specialists.
 Get informed so as to be in a better position to
separate fact from myth
 Identify available options for intervention
 Get involved with or start a support group.
 Get counselling.
WHAT GOVERNMENT SHOULD DO
 Provide facilities and trained manpower for the effective
management of CP and other childhood disabilities
 Provide support for families in terms of funding and
affordable or subsidized medication
 Ensure a disable friendly environment through the
provision of accessible public transportation and public
buildings
 Enact laws to reduce stigma, discrimination, abuse,
neglect, and violations of rights
WHAT GOVERNMENT SHOULD DO
 Train and deploy of a Medical Aids Corps of
adequately trained young adults to run awareness
campaigns
on
childhood
detection/intervention
disabilities
techniques
and
early
in
rural
communities.
 Establish
Special
Care
Units
for
Disabilities in hospitals/health centers
Childhood
WHAT GOVERNMENT SHOULD DO
 Establish Counseling Units in hospitals and
health centers to help families of children with
CP to cope the realities of their situation.
 Organize regular Seminars and Conferences on
CP and other childhood disabilities to serve as
forums where affected families and interested
members of the public can get better informed
about CP related issues.
WHAT GOVERNMENT SHOULD DO
 Build capacity for all categories of Healthcare
providers in the area of early intervention and
modern trends in the management of CP and
other childhood disabilities.
 Provide special medication and other management
options like physiotherapy, for children with CP
and other childhood disabilities.
WHAT GOVERNMENT SHOULD DO
 Train and deploy Special Needs Teachers and
Careers in schools.
 Identify and document affected families in rural
communities.
 Compile a register of relevant professionals for the
management of childhood disabilities in each
community.
CONCLUSION
 CP
is
the
most
common
cause
of
movement
disorders in children.
 It is also the most expensive childhood disability to
manage.
 Some causes of CP can be prevented through the
provision of adequate care for pregnant women and
young children.
CONCLUSION
• Families play a critical role in the provision of care for
children with CP and other childhood disabilities and
should be given the necessary financial, social and
emotional support to carry out that responsibility
• Effort should be made and facilities put in place to help
discover the hidden potentials of children with CP and
other childhood disabilities
THE WAY FORWARD
 Healthcare Professionals need to listen more and
provide
adequate
as
well
as
appropriate
information to families.
 Relevant agencies should support Benola’s effort to
raise awareness about CP and other childhood
disabilities to ensure that discussions continue
even at the highest levels.
THE WAY FORWARD
• There is need for families and NGO’s to come
together to form larger support and advocacy
groups for CP and other childhood disabilities.
• There is need for Government at all levels to rise
to their responsibilities towards children with
childhood disabilities and their families.
REFERENCES
 Parameter: Diagnostic Assessment of the Child with Cerebral Palsy:
Report of the Quality Standards Subcommittee of the
American
Academy of Neurology and the Practice Committee of the Child
Neurology
Society". Neurology 62 (6): 851–63. PMID 15037681.
 Benola CPI, (2013). Group 3 Syndicate Presentation at Benola’s Two
Day Round Table Meeting of Experts, Lagos.
 Benola CPI, (2013). Report of Roundtable Meeting of Experts on
Effective Management of Cerebral Palsy in Nigeria, Lagos. Cerebral
Palsy Children’s Hemiplegia and Stroke Association Report, (2012).
REFERENCES
• Ejeliogu, E. (2013) Management of Cerebral Palsy in Nigeria: Paper
delivered at Benola’s Two Day Roundtable Meeting of Experts on CP,
Lagos.
• Lesi, F.E.A. (2013). Cerebral Palsy: The Stigma, the fears and the
Reality. A paper presented at Benola Cerebral Palsy Initiative Family
Forum, Lagos.
• National Institute of Neurological Disorders and Stroke (2012).
Cerebral Palsy: Hope Through Research. Cerebral palsy information
booklet compiled by the National Institute of Neurological Disorders
and Stroke (NINDS).
REFERENCES
• Odding, E. Roebroeck, M.E. Stam, H. J. (2006). The epidemology of
cerebral palsy: incidence, impairments and risk factors.
• Rosenbaum, P. Paneth, N. Leviton, A. Goldstein, M. Bax, M.
(2007a). A Report. The Definition and Classification of Cerebral
Palsy April 2006. Developmental Medicine and Child Neurology
Journal Supplement, 49:8-14.
• Sa’ad, M. T. (2013) Early Detection and Effective Management of
Persons Living with Cerebral Palsy in Nigeria: Paper presented at
Benola’s 2 Day Roundtable Meeting of Experts on Cerebral Palsy,
Lagos.
REFERENCES
Sa’ad, M.T. (2012). Efficacy of Cognitive-Behavioural Therapy on SelfConcept of the Visually Impaired Students of Kaduna State Special
Education School. An Unpublished Ph. D Thesis Presented to the
Department of Counselling and Educational Psychology, University of
Abuja, Nigeria.
Umeh, C. S. (2013). Management of Cerebral Palsy: A
Multidisciplinary Approach. Paper delivered at Benola’s CP Family
Forum, Lagos.
REFERENCES
Websites
http:/www.achievebeyondusa.com
http://www.cpaustralia.com.au
http://cpfamilynetwork.org/
http://www.ehow.com/about_5070671_developmentaldisabilities.html#ixzz2jisGvEp9
http://www.katherinebouton.com/
Download